The surviving spouse of a veteran who died of service-connected cancer shares why the new law will have a positive impact for veterans and their caregivers in the future.
“How long do we have?”
“Without treatment? Three months.”
That was Army Cpl. Katie Benson’s introduction to the veteran health-care system. Katie had just been diagnosed with Stage IV biphasic mesothelioma. As her husband and caregiver, I became her unwavering support through the immense challenges that lay ahead.
Most toxins encountered by Global War on Terror veterans come from our own equipment including burn pits; open-air areas where solid waste, trash, chemicals, medical supplies, spent munitions, and plastics are burned.
But there are numerous other toxins that prey on servicemembers. Those who were stationed at Karshi Khanabad (K2) were exposed to depleted uranium. Veterans involved with Operation Tomodachi were exposed to radiation after the Fukushima Nuclear Power Plant meltdown. In Katie’s case, she was deployed to Camp Arifjan, Kuwait, where her barracks was located near an open-air asbestos pit.
The average age for mesothelioma diagnoses is 72 years old. In 2018, at just age 35, Katie was told by the VA that her cancer came from normal U.S. exposures. Her initial service connection claim was denied. To reverse this, Katie and her doctors mounted a relentless effort, using statistics and pinpointing the exact asbestos pit in Kuwait to prove her case.
Mesothelioma has a known cause: asbestos. Most cancers, however, do not. Asking veterans to prove the source of their exposure is not only cruel but impossible. The PACT Act, signed into law in August 2022, changed this. It granted many respiratory cancers and conditions presumptive service connection, lifting the burden of proof from veterans. The act also created a process for the VA to add conditions to the presumptive list, like leukemia for K2 veterans.
This victory was hard-fought. American Legion staff and volunteers, along with other veterans organizations, pressured Congress, demanding action.
While others fought for her service connection, Katie fought for her life.
The five-year survival rate for Stage IV biphasic mesothelioma is nonexistent, but Katie defied her three-month prognosis. We traveled across the country, from Sloan Kettering in New York City to MD Anderson in Houston, chasing the latest treatments and clinical trials. Whenever possible she stayed in our hometown of Portland, Ore., taking her infusions from one of the best views of our city on the 11th floor of the Franz Oncology Clinic.
Katie survived so much, but when her final treatment started to fail in March 2022, the stress of caring for her while maintaining my own career overwhelmed me. At 37, I suffered a series of heart attacks caused by takotsubo cardiomyopathy; broken heart syndrome. Forced to quit my job, I became Katie's full-time caregiver.
Katie entered hospice, and except for weekly visits from a nurse, we were on our own. I carried her from room to room, read to her when her vision failed, and helped her spend her final days with what joy we had left. Nights were spent administering morphine every three hours to keep her comfortable.
Our Multnomah County veterans service officer (VSO) encouraged us to apply for the VA Program of Comprehensive Assistance for Family Caregivers (PCAFC), which was meant to help caregivers like me. However, soon after applying, we were denied. According to the eligibility algorithm, Katie — while on her deathbed — was not sick enough. I wouldn’t find out until later the reason for the denial was because she still had the ability to feed, clothe and bathe herself. Our county VSO again came to our aid, procuring a waiver based on Katie’s status as a hospice patient, but the initial denial letter was devastating and left us lost.
Katie died in my arms July 9 at 1:45 p.m. In her final hours I sat by her side until she passed recounting our adventures together and reading the prologue from Lord of the Rings, her favorite book. In her final moments, I told her "I love you" after each breath she took, because I didn't know which would be the last. I made sure the last sounds she heard were of love, her last sight was my eyes, and the last touches were from my hands.
Katie defied the odds, living for three years with Stage IV mesothelioma — a diagnosis that initially came with that grim three-month prognosis. We made those years the best of her life, as her doctors marveled at her sheer determination and grit, embodying the unwavering spirit of an American veteran. Her final words, as her heart raced uncontrollably, were “Don’t panic.”
I didn’t panic. The day after her funeral, I flew to Washington, D.C., to join veterans from around the country and demand better care for toxic-exposed veterans through the passage of the PACT Act. Katie’s struggle to prove her invisible wounds were service-connected was unnecessary and heartbreaking.
In addition to the advocacy by veterans, many lawmakers were working hard behind the scenes, knowing the sacred debt our country owes to veterans. One such politician was President Joe Biden, whose own son, Beau, died of toxic exposure cancer. We shared a moment that goes beyond words when I told him both Beau and Katie would be proud of him
The PACT Act was a major step forward but not perfect. Its impact reminds us that caring for veterans is a continuous effort. Our system of veterans health care is a garden that requires tilling, planting, and at times, pruning.
Through the last two years few bills intended to help veterans and their families have passed. Falling to the wayside, not even being given the dignity of a vote. Many of these bills were named for the fallen servicemembers and caregivers they were championing; Gerald’s Law, The Richard Star Act, and the Elizabeth Dole Act to name a few. With each forgotten bill, the voices of veterans have gotten louder, amplified by The American Legion and its allies.
This changed in May 2024, when several stalled bills were combined into the Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act. Because so many bills were wrapped up in this omnibus, it became a must pass piece of legislation without much room for negotiation. After much effort by The American Legion and allies, it passed in the final days of the 118th Senate. We held press conferences, sent letters signed by the national commander and executive director, and — along with our allies — visited all 211 House Democrats in 24 hours to push for this bill.
A guiding principle of the Elizabeth Dole Act is to allow veterans to be taken care of at home. Whether that is their home state, county or house. Katie loved our home, Portland, with all her heart, it's where she was born, where we fell in love and were married, where she chose to die, and what she gave her life for.
On Jan. 2, Biden signed the legislation into law. Let me tell you what this 90-provision, 256-page document will do beyond declaring it will “improve veteran health care.”
This bill, in section 302, will bring the same quality of County Veteran Services I enjoyed in Multnomah County to rural counties and Native Territories across the country, so veterans who choose to live among the trees and plains can enjoy the same level of care as those who live in dense communities.
Section 143 ensures when a veteran experiences a service-connected health crisis in a rural state, as we did, the transportation to care is covered and finances are not part of the veteran’s decision to pursue care.
Section 303 protects the loved ones of servicemembers who have passed away by repealing the outdated law investigating Gold Star spouses for alleged remarriage. This rule is not well known, but intensely feared by the Gold Star community, and its repeal is a blessing to many.
Section 301 provides burial services to veterans who die at home while in receipt of hospice care provided by VA. Most veterans prefer to die at home, but the process is difficult for their loved ones, this removes the additional financial burden of burial.
Section 124 mandates that the VA provide detailed explanations and information about alternative services to caregivers denied by the Caregiver Program. This ensures that caregivers, who are already dedicating everything to support an ill veteran are not left feeling abandoned and lost with just a denial letter, as Katie once was.
Section 120 will increase the reimbursement cap for disabled veterans being cared for at home, allowing them to afford lifesaving ventilators and other durable equipment, while guaranteeing cost-savings to the American taxpayer.
Finally, Section 122 offers essential mental health services to caregivers, providing vital support to combat burnout and emotional exhaustion.
These are only seven examples of the 90-section bill that will help caregivers like me who have given their health and very soul to care for veterans who came home sick or injured. Together with the PACT Act, it shows that even in today’s divisive climate, we can honor our veterans and their families through perseverance.
Katie’s legacy lives on in this progress. We must continue the work, because every veteran and caregiver deserve dignity, respect and care.
Sri Benson, the surviving spouse of Cpl. Katherine Benson, is a Veterans Health Policy Analyst for The American Legion’s Veteran Affairs & Rehabilitation Division.
- Veterans Benefits